Links Especially for Parents:
Medical & Insurance Advocacy
Transition to Adult
The following links have been compiled and found useful by a varied
group of parents who also have a child with a sex chromosome aneuploidy
(SCA). Sites that contain primarily American material are
indicated by the initials U.S. at the end of the description
Behavior, the gathering place for Mental Health and Applied Behavioral Science Professionals.
National Society of Genetic Counselors, Inc. NSGC.
NSGC will promote the genetic counseling profession as a
recognized and integral part of health care delivery, education,
research, and public policy.
Central Auditory Processing Disorders
Auditory Processing (CAP) refers to a group of skills which we use to
interpret and store what we have heard. CAP skills typically
develop in the first five years of life along with receptive and
expressive language. Children who have a delay or disruption in
the development of these skills may have Central Auditory Processing
American Academy of Pediatrics Recommended
The Harriet Lane Links (formerly Pediatric Points of Interest). This is a huge site with varied resources. Well worth the time
and Children with Developmental Disorders and Brain Injury. "Our
goal is to provide the most comprehensive site available for the
discussion of medical and physical therapies for the treatment of brain
injured children, hence creating a networking structure for parents and
physicians alike. This website will provide viewers a new way of
looking at neuro/metabolic disease, and offer a creative opportunity
for involvement in the exploration of medicine and healing."
Medications most frequently used in the treatment of common neurobiological disorders of childhood.
This 39k PDF article, 9 pages, was written by a doctoral child
psychologist candidate. The original text was written completely
in caps and that has not been changed, so the text is quite dense, but
a good resource, nevertheless.
The Prenatal and Neonatal Resource Page. The Prenatal and Neonatal Resource Page from the Nurses Group. Prenatal care is essential for a healthy mother, child, and pregnancy. Incorporating things like prenatal vitamins and healthy exercise into your daily routine can go a long ways towards ensuring the health and well being of both mother and child. It is also important to be aware of proper prenatal testing that will alert to any development problems or abnormalities early and can help to prevent life threatening complications. Quality neonatal care, after a child is born, is also important because it is at that time when children are most susceptible to neonatal death. Read up on health information to ensure the health of you and your baby during the developing stages of life.
Prenatal diagnosis employs a variety of techniques to determine the
health and condition of an unborn fetus. Good site and highly
American Academy of Pediatrics
Medicaid Managed Care & Children with Special Health Care Needs U.S.
Families USA U.S.
HandsNet empowers organizations
to integrate effective online communications strategies to strengthen
their programs and policies for children, families and people in
Family Village, a global community of disability-related resources.
The Father's Network Our
mission is to celebrate and support fathers and families raising
children with special health care needs and developmental disabilities.
Parenting - Common sense tips on
dealing with whining, homework, tantrums, positive reinforcements,
teaching consequences, family meetings and more.
How I got a 504 Accommodation Plan
A 504 plan can be used for items such as hearing aids, and accommodations for
other physical disabilities. U.S.
About Special Ed advocacy resources
Federation for Children with Special Needs is an extensive and comprehensive Special Needs site and is highly recommended. U.S.
The Council for Exceptional Children (CEC)
is the largest international professional organization dedicated to
improving educational outcomes for individuals with exceptionalities,
students with disabilities, and/or the gifted. CEC advocates for
appropriate governmental policies, sets professional standards,
provides continual professional development, advocates for newly and
historically underserved individuals with exceptionalities, and helps
professionals obtain conditions and resources necessary for effective
My Child Without Limits
is a nonprofit organization dedicated to meeting the needs of those
working with children who have developmental delays in sensory motor,
language, social, and emotional areas.
U.S. Department of Education U.S.
ldonline an interactive guide to learning disabilities for parents, teachers, and children. U.S.
The National Information Center for Children and Youth with Disabilities (NICHCY)
is the national information and referral center that provides
information on disabilities and disability-related issues for families,
educators, and other professionals. Our special focus is
children and youth (birth to age 22). Spanish language resources,
Orton-Gillingham training and information
This site for educators and parents offers teacher tips for
multisensory education, articles, and educational links for help with
phonics, reading, dyslexia, learning disabilities.
Pacer programs help parents become
informed and effective representatives for their children in early
childhood, school-age and vocational settings. Through knowledge about
laws, resources and parents' rights and responsibilities, families are
better equipped to work with agencies to obtain appropriate services
for their sons and daughters. U.S.
centers in each state provide training and information to parents of
infants, toddlers, school-aged children, and young adults with
disabilities and the professionals who work with their families.
This assistance helps parents participate more effectively with
professionals in meeting the educational needs of children and youth
with disabilities. U.S.
Want to know about the Freedom of Information Act or how a bill in the
becomes law or how to write letters to the editor? How about
training or SSI or social skills issues? What about sexuality
relationship issues? You will find a huge online library of
great documents on these subjects and more. This site offers
information, ideas, and software related to the theme of empowerment --
helping individuals and communities
achieve self actualization and full citizenship.
Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY provides clear explanations of the genetics involved in the conditions, diagnosis and disclosure, development from infancy through early adulthood, potential health and fertility issues, and educational and psychosocial considerations. The guide is useful for individuals affected by extra X and Y chromosomes, as well as for teachers, counselors, social workers and health care and social services professionals working with this population. It is written in lay language but bases its contents and recommendations on published literature as well as a survey of over 800 individuals and parents done by the author in researching this book. For more information and how to order please visit the KS&A web site.
Suggest a Site
If you have found a useful parent site that is not listed here, but should be, please e-mail us at email@example.com and we'll check it out.
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This page first created:
May 24, 1999